Sad News From Our Community — Content Warning

CONTENT NOTE:

We are sharing some sad news and encourage you to take a moment to evaluate if it is safe for you to receive this news now. Please put your health first. If now is not a safe time for you, please pass on reading the content below for now.

  • Content warning for sharing the loss of a community member.

Honoring Beth Mazur

It is with deep sadness that we share with you that we lost one of our heroes and dedicated champions of ME yesterday. Beth Mazur passed away after battling ME for 15 years. She was a selfless beacon of hope and light for so many in our community and she demonstrated an unwavering commitment to the cause. We could not be more devastated. 

Beth put her whole self into the fight for equity for people with ME. Every person with ME mattered more to Beth than you will ever know. 

Beth Mazur and Jennifer Brea founded #MEAction based on an idea they shared in 2014. This organization would not exist without her. What she did since then has been extraordinary. She cared about the big things–what we fought for and how we advocated, and she also spent countless hours working with individuals to improve their circumstances. She was selfless. 

We will never fully know what Beth did for everyone at #MEAction and this community because she never sought recognition. She turned the spotlight onto the often-overlooked challenges we face. She wanted to help others who were suffering, and she did.

As we say our goodbyes, let us remember Beth not only for the battles she fought but for the victories she achieved. She leaves behind a movement that will endure, a testament to the power of one individual’s unwavering commitment to a cause larger than oneself. May her spirit continue to inspire us all as we carry forward the torch she so brightly lit.

On behalf of her family, friends, and all of us at #MEAction, we pay tribute to the kindest soul, who deserved better than to suffer from this terrible disease. We will be honoring Beth’s life in the new year and we will let you all know what the plans are once they are finalized. 

Beth was more than a co-founder, more than an advocate, more than a brilliant developer. Beth was a friend, a daughter, sister, companion, and her love and selflessness is impossible to describe. Our gratitude and love for Beth will live on and her legacy will live on. 

We love you, Beth. 

For any of you who experience trauma/grief/sadness/or suicidal thoughts from this post, we ask you to please reach out immediately. Your life, you as an individual, matter greatly to us, and we are sending our love to each and every one of you. 

We maintain a list of crisis resources by country here:

If going through a list feels overwhelming you can call or chat with 988 in the US or use findahelpline.com anywhere.

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23 thoughts on “Sad News From Our Community — Content Warning”

  1. Love you Beth. I will miss you! You mattered more than you could possibly know. Rest in peace my friend. ❤️

  2. The world has lost such a brilliant light. Brilliant in all senses. Her kindness shone. Her service to others was constant. She meant so much to us in the short time we knew her. She improved our son’s health and helped us know we were not alone. We will miss her immeasurably.

  3. RAELLE Myrick-Hodges

    I knew Beth to be a great friend to her friends, she had this infectious smile:laugh. She will be missed, I cried upon knowing and I only had the pleasure of meeting her a few times. Sending love to all her were blessed to know her🙏🏾

  4. Thank you for these beautiful words about precious Beth.
    The world has lost someone very very important.
    Her blessings to us all will live on with us.
    Love to all who love her x

  5. Am so sorry for her loss to her family and our community. She sounds amazing and wish I had the honor to have met her. May she be forever pain-free and at peace.

  6. Her beautiful soul will be missed. My heart goes out to all who are in pain from this devastating loss. What a true testimony to her quiet but sturdy impact on our community. Thank you Beth. You will forever be remembered!

  7. This sadness is all mixed up with the sorrow for not having been in touch for over a year, the confusion of remembering such a strong, even tempered, kind woman, who never showed me her weakness or pain. So many questions, so many missed opportunities, most of all no more hope for a different tomorrow for Beth Mazur. I hate that so many people continue to suffer from ME\CFS without much reason to expect change in the near future. Except; sometimes for reasons not yet understood, some people do get get suddenly better. Beth wrestled with this illness for 15 year, the worst of my journey changed during my 14th year after contracting and treated for acute encephalitic Lyme Disease. I know advances in medicine on a personal scale is slow and seemingly indifferent to individuals. I hope those thinking about letting go reconsider and leave opportunity for better days to come. Let’s reach for each other and love the strength derived from our bonds.

    1. I don’t know how to be Very Severe in a world where I’m denied a wheelchair and a toilet in a hospital in a major US city, and no one will provide me with medical care. I don’t know how to be at 10/10 pain level, unable to feed myself, and have no one care. I don’t even know the point of hanging on if I can’t get the very basics of medical care. Reaching out on Reddit, YouTube etc, only ways I can, and no one even answers. If we don’t treat each other like our experiences have value, who will?

  8. Please can I ask..I hear about a lot of young people dying with ME. I have severe ME and have been unable to get proper exercise for 25 years now.

    Are these people dying from medical complications or are they dying from euthensia?

    Because I think we should reject suicide and not feel ashamed if we cannot bear to live with this illness in its most severe form.

    I have only attempted to end my life one. It was when the DWP said I can walk 200metres repeatedly after I had been using en electric wheelchair for most of my adult life. I am not ashamed of this at all.

    I am so sorry for all the deaths that have happened. I had breast cancer & it was a picnic compared to this illness. People asked me why I was so happy when I hade breast cancer. It was because breast cancer gets proper support & recognition. It was a holiday from the skepticism & dumbfounded faces with no compassion whatsoever.

    Anyone who keeps going with this illness is a legend & the DWP need to understand that activity is dangerous for people with ME its not just uncomfortable, unpleasant or painful. Its physically causing long term damage and increasing the disability to make people with ME do activity.

    1. I don’t know about Beth – I only just heard the sad news. But deaths seem to be a mix of suicide/euthanasia, higher rate of heart complications, and more directly from ME e.g. gastrointestinal such as gastroparesis and being unable to keep down enough food or water (sometimes medical neglect by not providing feeding tubes or TPN is related to this). Some of the suicides have been related to medical abuse eg Robert Courney’s, but I don’t think anyone’s decision is for me to criticise. The page Causes of death on MEpedia says more about what is known plus MEpedia has a list of people known to have died of ME, and a category for deceased ME advocates who may have been lost to other illnesses (I am an editor there). Maeve Boothby-O’Neil’s inquest is ongoing.

  9. On behalf of Suncoast High School Class of 1994, I would like to express our deepest sorrow and condolences to all friends and family for Beth. She was a former classmate of mine in high school. I last saw her during our 15 year HS reunion. She was always a sweet person to know. Now the world has one less bright light on this planet. May you rest in peace, Beth. You and missed.

  10. On behalf of anll those connected to Action CIND, we extend our deepest condolences to the family and friends of Beth. 15 years is a long time to live with this devastating illness. RIP Beth.

  11. A heartbreaking loss for her family, friends and our MECFS community for whom she fought so hard. Thank you for all you did for us and now may you be at peace.

  12. Christine Williams

    I am so sorry to hear about Beth’s death. I too, have been sick with ME/CFS for 15 years. I was involved with advocacy also and met Beth on Capitol Hill. I was amazed at all she was able to do in spite of her illness. May her memory be a blessing and light the path going forward to find effective treatments for this terrible disease.

  13. I had the privilege to work with Beth helping a severely ill patient with ME during 2021 and 2022. She did a lot of work behind the scenes to help this patient. I’m sad to hear this and my heart goes out to her family, and our community.

  14. This is so heartbreaking… It’s a huge loss not only for our community, but for the world. Beth Mazur was an incredibly wonderful person. We’ll deeply miss her. Rest in Peace, Beth. We will all carry on your legacy and continue to fight ME in your honor.

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